Español
HAEA In Action Newsletter Facebook Twitter Instagram LinkedIn
IN THIS ISSUE


group photo
Protecting Your Privacy in a Changing HAE Environment

The HAEA community has achieved something remarkable. Together, we’ve helped make eight FDA-approved HAE treatments a reality—with three more expected in 2025 and five others in clinical trials. That kind of success is unheard of in an ultra-rare condition—and it’s driven by HAEA friends who’ve worked together as a united community in pursuit of a better life.

Our extraordinary success created a very active and extremely competitive HAE environment. Today, a simple Google search for “HAE” brings up dozens of websites from drug companies, marketing firms, and others promoting treatments, surveys, newsletters, or trials. In addition, HAEA friends now receive what seems like a constant stream of solicitations through email and social media platforms, often encouraging us to sign up for information, join groups, or participate in research. In almost every case, you will be asked to provide your contact information, and that’s why it’s more important than ever to protect your privacy.

While many groups investing in HAE medicines can be trusted, it's still vitally important to know who is collecting information, for what purpose, and how your personal data will be used and protected. Some of these groups align with our goals and the needs of people with HAE, however, others are chasing purely commercial opportunities that don’t reflect our longstanding efforts to build and maintain a cohesive community that serves the interests of all HAEA friends.

Simple Ways to Protect Your Information
  • Be careful about clicking on links or filling out forms from people or groups you don’t know.
  • Only share personal or medical information with organizations you trust.
  • If something feels off—even just a little—trust your instincts and don’t disclose any personal information.
When in Doubt, Reach Out to the HAEA

We're here to help! You can contact an HAEA Advocate at health@haea.org or call our Advocacy line at 866-798-5598.

With nearly 11,000 members and a quarter-century of work behind us, the HAEA remains fully committed to protecting your privacy and keeping our community strong. Let’s vigilantly protect our privacy by exercising caution when sharing personal information or participating in efforts that don’t align with our vibrant and growing HAEA community. Remaining united will ensure continued progress in achieving our shared goal for every HAEA friend--unrestricted access to therapy and a life unburdened by HAE symptoms.
scholarship
Celebrate hae day :-) 2025 – Make a Lasting Impact!

hae day :-), recognized every May 16th, is a powerful reminder of what we can achieve when we come together as a community. Established through Senate Resolution 286, this day has grown into a global movement dedicated to raising awareness, advancing education, and advocating for improved treatments for HAE.

As we approach hae day :-), the HAEA community reaffirms its commitment to progress—ensuring that individuals with HAE continue to receive the support, education, and medical advancements they deserve.

This year, we will be mailing out a special hae day :-) poster to US HAEA members and encourage everyone to spread awareness by:
  1. Snapping a photo with their poster,
  2. Tagging the US HAEA when they post their photo to social media, and
  3. Joining Team USA for HAEi’s global be #active4HAE campaign!
  4. Giving back and making a lasting impact by donating to the HAEA. Your generosity helps fund essential programs that improve lives, expand research, and empower the HAE community.
Make a Difference Today and Donate Here!
youth group photo
Uniting for Impact: HAEA Youth Leaders and Social Media Interns Gather for 2025 Leadership Training in Baltimore

Last month, members of the HAEA Youth Leadership Council (YLC) joined forces with the 2025 Social Media Interns for an inspiring Youth Leadership Training meeting in Baltimore, Maryland. This exciting event focused on strengthening HAE advocacy efforts, expanding leadership skills, and engaging in collaborative strategic planning for youth programs at the upcoming HAEA National Summit and future youth-led initiatives.

Through interactive workshops and planning sessions, young leaders sharpened their ability to lead and inspire change within the HAE community. The YLC and social media interns look forward to welcoming HAEA friends at the 2025 National Summit in July and showcasing their newly acquired advocacy skills.

Learn more about the HAEA Youth Leadership Programs:
https://www.haea.org/pages/p/youth_leadership

action alert
Advocacy Action Alert: Together, We're Making Strides for the HAE Community

State Legislation Updates:

New York: Governor Kathy Hochul signed A.901A/S.1267A into law, putting critical guardrails on step-therapy policies to protect patient care.

New Jersey: S 530 was recently introduced to ensure insurers respond to prior authorization requests within 48 hours. This is a major step toward faster access to care.

Indiana: SB 33 passed the Senate and is headed to the House. This bill would prohibit discrimination by insurance companies based on genetic testing results.

New Hampshire: SB 17, similar to the federal HELP Copays Act, would ensure all copayments count toward a patient’s out-of-pocket costs. It has passed through the Senate committee.

California: Three major bills — AB 512, AB 510, and AB 539 — have passed through committee. These would shorten grievance wait times and require that prior authorizations last at least one year.

North Dakota: Governor Kelly Armstrong signed HB 1216 into law. Like the federal HELP Copays Act, it ensures that every copayment counts toward out-of-pocket maximums.

Federal Legislation Updates:

S. 864 – HELP Copays Act has been reintroduced in the Senate. This critical bill ensures that manufacturer copay assistance counts toward a patient’s cost-sharing requirements.

S. 752 – Accelerating Kids’ Access to Care Act has been reintroduced in the Senate and aims to streamline out-of-state care access for kids on Medicaid with rare diseases.

Stay Informed & Engaged Let’s keep building a stronger future for all those affected by HAE.

HAEA Youth Leader Ally B. Joins HAE International (HAEi) LEAP Program in Copenhagen

At the end of April, HAEA Youth Leader Ally B. traveled to Copenhagen, Denmark, to participate in the HAEi LEAP (Leadership, Education, Advocacy, and Patient Engagement) program; an initiative that empowers young people with HAE to become stronger advocates and leaders.

The program began with a three-day, in-person workshop where Ally collaborated with young leaders from around the world. Together, these youngsters built new friendships and an international network of like-minded advocates.

"Even though we are from different areas of the world, the struggles we face with HAE are universal. We will never let our rare disease define us!" - Ally B.

Throughout the workshop, Ally developed valuable skills in project planning, public speaking, and advocacy, which prepares her for a leading role in supporting the US HAEA community.

Ally’s LEAP project will focus on creating a new resource for young adults starting college. She plans to produce both a podcast episode and an educational guide to empower students with HAE as they take this important step in their lives.

We commend Ally for her dedication to providing such useful resources for our HAEA youth!

Watch this month’s On-Demand HAEA Treatment Education Series Webinars!

We invite you to watch the following fully on-demand HAEA Treatment Education Series Webinars!

Every member of our united HAEA community should take pride in your efforts that resulted in these noteworthy accomplishments! We wish all HAEA friends a joyful holiday season and a happy, healthy, and productive 2025!

Youth
  • Topic: Re-Treating? Let’s Define It and Talk About It
  • Guest Speaker: Mark Davis-Lorton, MD and Kelly (Person with HAE)
  • Sponsored by: Pharming
In this webinar, Dr. Mark Davis-Lorton and an individual with HAE, Kelly, discuss the concept of re-treating an HAE attack. Hear both the clinical perspective and real patient experience as they explore this interesting topic.

You can access the webinar by clicking HERE!
Capitol Hill
  • Topic: Gene Editing Explained: Why Should You Understand the Potential?
  • Guest Speaker: Paula Busse, MD and Eugene Choo, MD
  • Sponsored by: Intellia Therapeutics
Tune in to this webinar, which dives into the emerging world of experimental gene editing and how it might impact HAE treatment. Expert speakers, Dr. Paula Busse and Dr. Eugene Choo, break down what experimental gene editing is, how it’s thought to work, and why it's important for individuals living with HAE to understand this evolving area of science.

You can access the webinar by clicking HERE!
Newsletter icon Podcasts

PodcastSpeaks
Listen to the #BeyondHAE Podcast: Young Advocates on Capitol Hill Fighting for Rare Disease Policy

Youth Podcast series In this special episode of the #BeyondHAE podcast, we hear from three passionate young advocates, Zach, Angel, and Arabel, who took their voices to Capitol Hill during Rare Disease Week. These young HAEA advocates met with legislators to push for policies that improve the lives of people and their families suffering from rare diseases (including HAE).

Tune in as they share their experiences from the event, discuss the importance of Rare Disease Day, and break down key advocacy issues they addressed. They’ll also explore ways that you, no matter where you are, can get involved in rare disease advocacy from home.

Join us for an inspiring conversation about the power of young advocates, the policies that matter, and the impact they hope to make for the HAE and rare disease community!

Listen to the podcast HERE!

Community Blog
Listen to the HAE Speaks Podcast: A Dialogue with Global Experts about Bradykinin-Mediated Angioedema

HAE Speaks Podcast In this month’s episode of the HAE Speaks Podcast, please join Raffi Tachdjian, MD, MPH, and Associate Clinical Professor at the David Geffen School of Medicine at UCLA, and Kenny Robinson, MD, Head of Medical Affairs of North America at Pharvaris, for a discussion about the full spectrum of a bradykinin-mediated angioedema attack.

This podcast episode highlights the experience of the physician and those living with bradykinin-mediated angioedema, explores the nuances of attack progression and resolution, and shares strategies to inform clinical assessment and improve outcomes for individuals with HAE.

Listen to the episode now by clicking HERE!
Health Awareness and HAEA CARE Groups (Community, Acceptance, Respect, Empathy)

Focus on Your Overall Well-being During Mental Health Awareness Month with the HAEA CARES Groups

May is Mental Health Awareness Month, which encourages us to recognize the importance of our overall psychological well-being.

Our experiences with HAE can shape our mental health journey and many of us have developed positive coping strategies. By sharing experiences, we can learn from each other and explore options for improving our overall mental health.

Join us for some great discussions during our monthly HAEA CARE Groups, where HAEA friends share experiences and support each other. We hope you can join us. Please reach out to the health team at 866-798-5598 or health@haea.org. We are on this journey together.

You can also explore the HAEA Academy's HAE and Stress Management course for practical tips on managing stress and HAE. Click HERE to start the course.

The HAEA CARE Groups are held virtually three times a month through Zoom.

Upcoming HAEA CARE Group meeting times:
  • 1st Wednesday of the month - 7:30 PM ET / 4:30 PM PT
  • 2nd Thursday of the month - 11:00 AM ET / 8:00 AM PT
  • 3rd Tuesday of the month - 10:00 PM ET / 7:00 PM PT
Clinical Trial icon Clinical Trial Updates

What is a Clinical Trial?
Clinical trials are research studies conducted to evaluate whether a medicine to treat HAE is safe and effective in humans. Clinical trials are a critical part of drug development and are required before a treatment can be approved by the Federal Drug Administration (FDA) and become available by prescription.

What are the benefits of participating in a Clinical Trial?
Clinical trials can offer an open-label extension, which means free access to HAE medicines being studied until they are approved and commercially available. Participation in a clinical trial also provides regular touchpoints with an HAE physician throughout the trial period and allows you to have a more active role in your health care.

Following is a list of clinical trials currently underway. If you are interested in receiving more information on clinical trials, or are interested in participating in any of the trials listed below, please reach out to the HAEA Research Team at research@haea.org.

ALPHA-ORBIT Trial

The US HAEA is currently assisting Astria Therapeutics in recruiting people for the ALPHA-ORBIT trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational subcutaneous injection (Navenibart) given every 3 or 6 months to prevent Hereditary Angioedema (HAE) attacks. This is a placebo-controlled study, but there is a higher chance of receiving the study drug versus placebo. The use of an approved on-demand medication to treat acute attacks is permitted.

You may qualify for the ALPHA-ORBIT trial if you are diagnosed with HAE Type I or II and are 12 years of age or older. After completing the ALPHA-ORBIT trial, participants may be eligible to join the long-term extension trial, and continue receiving Navenibart to prevent HAE attacks at no cost.

The CHAPTER-3 Trial

The US HAEA is currently assisting Pharvaris in recruiting people for the CHAPTER-3 trial, a Phase 3 worldwide clinical research study to investigate the safety and effectiveness of an investigational once-daily oral drug (deucrictibant) to prevent Hereditary Angioedema (HAE) attacks. This is a placebo-controlled study, but there is a higher chance of receiving the study drug versus placebo. The use of an approved on-demand medication to treat acute attacks is permitted.

You may qualify for the CHAPTER-3 trial if you are diagnosed with HAE Type I or II and are between the ages of 12 and 75 years old, and have experience using standard-of-care treatment to manage on-demand treatment for HAE attacks. After completing the CHAPTER-3 Study, participants may be eligible to join the open-label extension (OLE) study, and continue receiving deucrictibant to prevent HAE attacks at no cost.

The HAELO Study

The US HAEA is currently assisting Intellia in recruiting people with HAE for the HAELO study.

The HAELO study is a phase 3 study to evaluate the efficacy and safety of NTLA-2002 compared to placebo in adults with HAE. This investigational drug uses CRISPR gene editing to potentially treat genetic diseases.

To qualify for the HAELO study, participants must be 18 years of age or older with a clinical history consistent with HAE Type 1 or Type 2. This study will help researchers learn if the study drug is safe and effective for people with HAE when compared with placebo.

The OASIS-HAE Plus Study

The US HAEA is currently assisting IONIS in recruiting people with HAE for the OASIS-HAE Plus study.

The OASIS-HAE Plus study is an open-label extension study without placebo, evaluating the safety and effectiveness of an investigational subcutaneous preventive medicine called donidalorsen, which is given once every 4 or 8 weeks. This investigational drug uses a technology called antisense, which targets the kallikrein generating system using messenger RNA to suppress the protein that produces kallikrein.

To qualify for the OASIS-HAE Plus study, participants must be 12 years of age or older with a documented diagnosis of HAE. This study will help researchers learn if the study drug is safe and effective for people with HAE when given over a long-term period. Participants in the OASIS-HAE Plus study are either switching over from a different prophylaxis therapy, or continuing on from another donidalorsen study.

KONFIDENT-KID Study

The US HAEA is currently assisting Kalvista in recruiting children ages 2-11 with HAE for the KONFIDENT-KID study, a worldwide clinical research study to investigate the efficacy of an investigational oral drug (sebetralstat) to relieve the symptoms of Hereditary Angioedema (HAE) attacks in pediatric patients.

If you have HAE Type I, Type II, or HAE with Normal C1-Inhibitor and are interested in learning about new clinical studies to prevent attacks, please contact an HAE advocate at 866-798-5598 to see if there will be an active clinical trial site in your area.
Social Media Snapshots

Don’t miss the latest HAEA news and announcements, connect with us on social media!

social media snapshots instagram twitter facebook linkedin Tiktok
Update your HAEA membership information HERE!

HAEA

10560 Main Street, Suite PS40
Fairfax City, VA 22030

   
CONTACT AN HAE ADVOCATE:
(866) 798-5598
 DONATE 
  
 JOIN HAEA 
The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community’s quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies. Copyright © (2025) US Hereditary Angioedema Association All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means, mechanical, electronic, photocopying, recording, or otherwise without the prior written permission of the US Hereditary Angioedema Association. For information, send an email to info@haea.org.